'It's all in the way you look at things...'

Life often takes you down unexpected paths. You can't change the road
but you can choose to make the journey meaningful, as this Delhi-based
mother did.

As a mother of a child with Down's Syndrome, Shalini reached out to people who could guide her. Today, she's the force behind a support group for parents like her

The first impression I have of Shalini Saran Gupta as she walks into the room, her heels beating a sharp tattoo on the floor, is that of a woman in control; a fry cry from the frazzled mums of my acquaintance. There's nothing to suggest that life has been anything but kind to her. Absolutely nothing to indicate that she's been dealt, what many would call, an unfair hand by destiny: a child with Down's Syndrome.

A bolt from the blueA second-time mum-to-be at 35, Shalini didn't think anything was amiss. The unexpected blow came in the delivery room when horrified whispers began to penetrate her still-fuzzy brain: 'Floppy limbs; looks like DS'. Even in her befuddled state, Shalini recognised the clinical symptom of Down's Syndrome - her baby's rag-doll-like appearance, indicating lack of muscle tone. 'We were told that she would not walk before four to five years of age, would never ride a tricycle, would never speak, and would study till preschool at best. She also suffered from severe cardiac trouble, pulmonary hypertension and pneumonia.'

Coming to termsShalini was in a state of shock. Her husband Shalendra broke down before stoically deciding to move on, to do whatever needed to be done for the baby. Shalini, on the other hand, went through a prolonged phase of denial, depression, tears and anger. 'As a newborn, Gayatri only saw me crying. Here was a child who needed lots of love, cheer and positivity, and all she got was tears.' Ironically enough, it was Gayatri who gave Shalini the strength to fight back, with the simple act of being there and needing her.

Shalini recalls a rather telling conversation with a friend's mother that helped her come to terms with her situation. A simple Punjabi lady, she used an analogy that got Shalini thinking. 'She reminded me how we accept the prasad from a puja without question. "Do we pause to think whether it's sweet, sour or bitter?" she asked me. "Don't we just swallow it in gratitude? Accept your child the same way," she advised.' The thought struck home.

When the tough get goingAfter the endless whys and wherefores of her situation, Shalini began to emerge from the cocoon of her depression. She realised that she was uniquely placed to bring up a child with special needs. With a PhD in corporate planning from IIM Ahmedabad, Shalini had a trained and analytical mind that thrived on challenges. Having worked with some of the world's biggest multinationals, she had chosen to take an assignment with Ashoka Innovators for the Public, where she directed a strategic partnership with McKinsey Consultants the year before Gayatri was born. The project sought to empower NGOs by showing them how to function as efficiently as a professionally run corporation. By an odd coincidence - which seemed nothing short of divine intervention in hindsight - the particular NGO Shalini had been involved with was devoted to disability.

This meant that not only was Shalini familiar with what her daughter's condition entailed, but also the road they would all have to walk together. 'That's when I began to believe that there's someone up there with a definite game plan and that we are mere puppets in his hand.' What she didn't know then was that several amazing people would appear in her life to help her along.

Helping handsThe very first person to lend help was Dr Rekha Ramachandran, president of the Chennai-based Down's Syndrome Federation of India. By the time Gayatri was a month-and-a-half old, Shalini was beginning to reach out to people who could guide and advise them. 'As the mother of a DS child herself, Dr Ramachandran counselled me on the phone for hours while I merely sobbed. I was a complete stranger to her but she flew out to Delhi the same evening to be with us. In our house the next morning, she sat holding our hands and just talking to us.' Nearly a week later, Dr Ramachandran sent over her core team to train Shalini in handling Gayatri.

Gayatri herself was proving to be a little tiger, who seemed determined to fight back. Her lively personality gave her parents the impetus to view her prognosis as a challenge and set out to prove the doctors wrong. What followed was a slew of therapies - speech, occupational and physio. Shalini herself spent most of her waking moments with Gayatri, talking to her, pointing out every little thing, exercising with her and making sure it all seemed exciting.

Even the simple task of bathing the child was turned into a learning game with Shalini directing attention to each body part, the things they used, and even the feel of soap on the face. The house was soon bubbling with fun and laughter, and a whole lot of drama and excitement to keep Gayatri involved in the learning process.

By the end of the year, Gayatri had met all the milestones mandatory for typical children. Simultaneously, with the help of Pranic healing, the holes in her heart had healed as well.

Going to AmericaIn search of more up-to-date research and methodologies, Shalini began taking Gayatri to the US every year. She zeroed in on the Utah-based National Association for Child Development (NACD). With access to their research, resources, specialists and therapists, Shalini found that they not only assessed Gayatri's progress more accurately, but also found ways to fast track it. 'The therapists would appraise her condition, develop a three-month-long programme that we could follow back home, and even put down the milestones we should watch out for. I would send them regular feedback on email and videos of Gayatri to let them know how she was progressing.' The results were stunning. Other parents with special children lined up at Shalini's door, eager to know what she had been doing with Gayatri.

Family is a blessingShalini's husband Shalendra, a management professional like herself, became her pillar of support. Even in their darkest moments, he reminded her that life would show them the way.

Apprehension about how their older daughter Advika, then just seven years old, would react to her special sibling, gave them sleepless nights. They decided to keep nothing from her and openly discussed her sister's medical condition in her presence. She accompanied them on the endless visits to therapists, and gradually began to understand how and why her sister was different. 'We equated the differences with the differences you see in life - some people need glasses, others don't.

Yet I wonder how Advika coped. She must have had to explain to her friends why her sister had a squint, talked slowly, and needed constant medical help. It must have been hell.' But Advika was processing the information and dealing with it in her own way. She took to doing science projects related to the problems Gayatri was going through.

For instance, Gayatri's weak eye muscles became the subject of intense curiosity for Advika. From exploring to understanding, she got involved in all activities concerning her sister. Their extended family rallied round them, providing moral and emotional support. Both sets of grandparents embraced Gayatri wholeheartedly - there was never any sense of inferiority, shame or even a whiff of social stigma. Cousins living abroad pitched in by sending toys, teaching aids and information on children with special needs. One cousin gently pointed out to Shalini that her overwhelming dedication to her daughters was making her neglect Shalendra and her own self.

From a slender frame, she'd literally ballooned. She'd also turned into a social recluse. Jolted out of the narrow little world she had created, Shalini's naturally sunny disposition began to assert itself again. She realised that life could still be fun. 'It was only when I began going out socially again that I realised that my clothes and shoes were completely out of kilter with the rest of the world!'

Wings to fly withUnlike other parents of special-needs children, Shalini hasn't set up a trust for Gayatri. She'd rather invest the money in developing her child's potential. 'We want Gayatri to do what she wants with her life, to follow her own passions. Our job is to make her independent.' Today, at eight, Gayatri attends Vasant Valley School, India's first fully integrated school for inclusive education. She studies with other special and typical children in a classroom that, apart from a teacher, also has a special educator.

She is still on the NACD programme, now limited to an hour every evening. Shalini has turned to creating awareness about DS and counselling those in need. She shares experiences, research and study material, and advises parents seeking direction. She has also helped bring NACD to India.

Shalini is the motivating force behind an informal support group called SAATH for parents of special children from across the country. 'We organise picnics and get-togethers, provide emotional support to each other, and share resources. But more than that, we just have fun together.'

Indeed, the overriding message in Shalini's story is that bringing up children with special needs can and should be a joyous experience. Despite her success with Gayatri, one thought continues to haunt Shalini: What will happen to their child after them? Never one to sit back and brood for long, Shalini already has a solution: setting up an assisted living community of international standards for young adults with special needs. Yet another task that is sure to test her mettle.

If you have a special child'Recent medical research has proven that DS children are not "mentally retarded",' asserts Shalini Saran Gupta. 'instead, they are highly trainable and smart. they just need large inputs in their formative years.' Shalini firmly endorses this view believing that with the right support, these children will do their parents proud. so if you have a child with special needs

Accept your child and love her unconditionally

Ask for support and help from family and friends - the depression can be killing

Have a vision of what you want your child to be in the short and middle term. Detach yourself a little from your child to effectively work towards that goal

Work towards that goal with assistance from professionally run organisations such as NACD* or DSFI*

Become part of a support group such as SAATH*

Explore alternative therapies such as Pranic healing and Reiki. They help heal the mind and emotional imbalances